Much like the topic of intimacy and sex, genital lymphedema is a tough topic to broach in the patient community. If you are reading this term for the first time, you might be shocked to learn that lymphedema can affect the genitals in both children and adults alike.
What is genital lymphedema?
“Genital lymphedema is a buildup of fluid that causes swelling in the soft tissues of the genital area. Lymphedema is due to blockage in or damage to the lymph system. This condition can affect both males and females.” Source: Genital Lymphedema via Cleveland Clinic.
In support groups, many people find it difficult to discuss the private aspects of their lives impacting their relationships and overall sexual health and satisfaction as well as the psychological feelings of isolation compounded on top of any additional limb swelling they may or may not have developed. Complications may arise such as lymphorrhea or blistering, which may make it difficult to walk or sit. It may impact dating as a single person. Your spouse may or may not be understanding or willing to adjust.
Bottom line, people living with genital lymphedema don’t know who to ask or where to go for help. They don’t know if other patients have their same symptoms. Their health professional support system may not know either.
The best way to combat the unknown is with information. As a first step towards that end, we had our first ever genital LE speakers from LymphED and Lymphoedema Network Wales on October 21, 2019.
We were so blessed and fortunate to have Dr. Rhian Noble-Jones and Dr. Shelley Smith DiCecco take time out of their busy schedule to prep spontaneously for a FB Live while Dr. Noble-Jones was in the United States for the annual Lighthouse Lymphedema Network Conference in Georgia.
Normally I book speakers 1-2 months in advance, but this time we did it in 48 hours. Dr. Noble-Jones was only in Atlanta for a few days, so we definitely appreciated all of their efforts in not only speaking to our group, but also developing the follow up handout materials and slide deck.
We cannot thank them enough for taking the time to be with us and accepting my Q&A questions on such short notice. This is an example of medical professionals in the lymphatic community who go way beyond the extra mile to helps us as patients and are working to break new frontiers in research to provide us with desperately needed information.
To view the Facebook Live on replay, you must join or be a current member of the Official Lymphie Strong Inspiration Group for Lymphedema. Type “Shelley Smith DiCecco” in the search toolbar at the top of the group page and press Enter. Press play to watch just like any other video. It is approximately 27 minutes long, so please set aside about a half hour to watch the whole thing.
For more information including contacts, please view the handouts below.
Exclusive HandoutsThe following handouts were developed directly in response to Q&A submitted to them on behalf of the Lymphie Strong community.
Currently as of December 2019, the International Lymphoedema Framework is conducting a survey for healthcare professionals globally.
More than 600 have already completed the survey on the educational need for genital oedema. Help us to learn more about the educational needs and tools that we should be developing – from both patients’ and professionals’ perspectives -> surveymonkey.co.uk/r/GenitLymph
The more we help each other as a support group, the further ahead we move as a community. I want to say thank you to all of the brave members who stepped forward with their questions and of course the health professionals participating in the survey.
Wishing you great lymphatic health,